Friday, 3 August 2018

8 months and still no diagnosis. Have we failed our son?

I've just got back from an appointment with a dermatologist. My son was finally referred to one a few weeks ago. You see, he's been suffering with a strange rash since early December 2017. Well, I say suffering - he's not actually complained about it, it doesn't hurt or itch, but it has slowly grown and is now very widespread. I'll explain a bit more about that in a moment, but right now these are the thoughts spinning around my head...

Have I failed my son? Why did I not demand to see a specialist sooner?

What if it's actually really serious and our lack of pushing for an appointment has harmed him further?

Why did I just google it when the dermatologist told me not to?

Can my son afford to wait 3 months for the next appointment to come through? Shall I just find a private paediatrician? How do I even do that?

What if I don't go private and this is serious? Have we waited too long?

We've seen a doctor 4 times, was that enough?

Have I failed my son? Why did I not demand to see a specialist sooner? And so it continues...

Somebody slap me. I need to get a grip.

Let me fill you in on the story so far...

Early December 2017 - S develops 3 or 4 raised red spots on his tummy. Didn't think too much of it, just made a note to keep an eye on it. He'd already had chicken pox earlier that year. It didn't look like that anyway.19th December - Spots still there, one is looking scabby. I took photos. Christmas was around the corner and he seemed well in himself. Wasn't too concerned, kids get viral rashes all the time.

The first few spots.

29th December - Quite a few more spots appeared by now so I get an emergency doctor's appointment. The doctor wasn't concerned although he wasn't sure what it was. We were sent away with calamine lotion (even though it didn't itch!) and told come back in 3-4 weeks if it got worse.It got worse.

Some of the spots on his front. There were more on his back.

23rd January - We went back to see a different doctor. He questioned whether it could be a variant of a virus common in children called molluscum contagiousum, part of the chicken pox family. Sounds like a Harry Potter spell! I was told that if it were this, it could take 6 months or longer to clear up! It's quite contagious if the blisters burst and come into contact with others, but none of his spots developed blisters (which is usual with this virus), and his sister didn't have one spot! I wasn't convinced but as he was so well otherwise, I decided to let time pass and see what happened. He was allowed to go to school as normal, but by now the teachers had noticed and were a little worried about infection themselves.A few months passed. The spots seemed to disappear very gradually, then new ones would appear in a different place. He began to get a few on his neck and the odd one or two on his upper arm and thigh. Still, the doctor had told us that it was a waiting game. So we trust them don't we? They are the experts after all, and despite having to have some antibiotics for an ear infection in March, S remained fit and well.By mid-May the spots had started to spread again so I made a doctor's appointment with the same doctor as before for continuity. We had a 3 week wait. The 27th finally came around and the doctor had another look. He decided that now, it looked a little dry so treated it as if it were a skin complaint such as eczema. We were prescribed some topical cream and a steroid cream. I still wasn't convinced, so took the decision to stop using the steroid after 2 weeks as there was absolutely no change. All the other cream did was give him softer skin but still, his rash persisted.June came and went. The rash didn't. S was having a swimming party at the end of July and by now, he was conscious that he looked different, and he didn't want people to think he was infectious! If any body asked what was wrong with his skin, he got all defensive and said, "The doctor doesn't know yet but it's NOT chicken pox!" Bless him. Enough was enough. I booked another appointment (again for 3 weeks time!) and we waited.On the 9th July, we explained our story to another doctor. He took one look at S's rash, then my face and before I could say anything else, he said he would write us a referral to a dermatologist straight away! I breathed a huge sigh of relief and thanked him, as I'd gone in there ready to demand this anyway! He told me I was right to stop using the steroid cream, and there was no harm in continuing with the other cream as it was at least making his skin lovely and soft! Although he didn't really think it was helping the condition.

What the photo doesn't show is all the new spots under the surface.
In a few days, they'd be red and raised too.

I got home and rang the referral service straight away. Within 2 weeks we had our appointment through for today. I was actually really looking forward to taking him, hoping that today we'd get some answers and a positive course of action. The doctor was really thorough, asking questions about the history of the rash and whether he had any allergies. He inspected a lot of the spots with his magnifying tool and had a really good look at S. I held my breath. This was the moment we'd waited 8 months for - a diagnosis. A name for the condition. A specific treatment or cure. Nope.No such luck. All the doctor could tell me was that is WASN'T a rash! The red spots and subsequent scabs were burst blood vessels under the skin! Something was happening inside my boy to make these marks appear. It obviously wasn't infectious because R hasn't developed it. And that's all he could tell me. That, and "don't Google it." Which of course, I did. And he's right. There are so many things that could be causing this. I wish I hadn't looked because now my mind is going 10 to the dozen, thinking the worst. Our saving grace is that S is otherwise fit and well. He's a healthy, happy boy and that's what I need to focus on.

So what's next?

We're now being referred to the hospital paediatric department but there's about a 3 month waiting list. We're also being referred to the dermatology department at the hospital too which could be in about 5 months time. The NHS is such a valuable resource and it's so stretched. I have every faith that they will get to the bottom of this... but do I wait? Should I look at going private? This is where my head starts to spin again and all those questions resurface.I don't want to fail our son. I just want to find out what is happening and why. And I just wish he didn't have to wait any longer. I was told to try not to worry but that's a parent's prerogative. I am worried. Worried sick. I really shouldn't have Googled it!

To be honest, I'm not entirely sure why I've written this post. I'm not sure what I'm trying to achieve by it. But it's made me feel a little better getting it all out! Maybe I can look back at it tomorrow with fresh eyes, and consider our next steps. What's best for our son. Here's hoping our appointments come through as quick as possible and we get a diagnosis soon.Thanks for reading if you got this far!One worried Mummy, Rachel. xFinding joy in the little things: I like to end all my posts (where it fits) with a positive thought, however small! Today both children fell asleep in the car on the way home from the appointment - blissfully unaware of the stress and worry of the situation! It gave me a much needed hour of peace and quiet to gather my thoughts, have a cuppa and generally calm down a little bit!

34 comments:

Oh poor you. It’s so worrying isn’t it when something like this happens. You question absolutely everything. I’d say keep pushing until you know what it is. I have similar spots caused by burst blood vessels under the skin and loads seem to pop up at once. I worried myself sick over it thinking the worst. Same if my children get rashes too. Keep pushing if you’re not happy or confident with the doctors answer. And don’t beat yourself up either; it sounds like you have been as thorough as you could be!

You have NOT failed your son. You've taken him to the doctors plenty of times, and believed a so called expert - that's not in anyway a fail on your part. I really hope you get to the bottom of it. The waiting is always the worst for anything like thisDebbie

You are doing so well to cope with this, and your little boy too. There is no failure here! Just a frustrating situation for everyone. Something I don't know if anyone has mentioned, has he had a blood test to check his platelets? I have a condition called ITP (an autoimmune that causes my body to destroy my own platelets) and I get burst blood vessels under the skin a lot. I'm just wondering if they did full bloodwork to investigate that as well? It's frustrating that so often we have to really push to get things done.

Hi Christy, thank you for your comment. The dermatologist has referred us to the hospital paediatrician for blood tests but unfortunately I still haven’t had the referral letter through, so we’re facing a long wait even just for bloods it seems. I’m considering going back to my GP to see if they can fast track some whilst we wait for our appointment. I did read about autoimmune conditions linked to burst vessels, so it’s on my radar now. Hoping for progress soon.

Its so hard to know what is right in these situations, but it sounds like you are doing all the right things. Except googling it - although I would be doing the exact same thing. My youngest had a series of nosebleeds at a very young age and when we finally got a referral to see the specialist it was a four month wait. I remember bursting into tears feeling very helpless. I hope you get some answers soon xxx

Oh I'm so sorry that you're all having to go through this! It's so difficult for us mums, because we want to solve every possible problem with your children, but some things are out of our control. I hope you find some answers soon!

This sound similar. He had pox in April so 8 months before this started. Could be connected? I’m glad your children’s cleared up eventually, I hope my son’s will too because we face a long wait to see the paediatrician. I’m fact, we had our referral letter to see the hospital dermatologist through this week - June 2019!! Ridiculous.

Firstly, you have not failed your son. You have stuck to professional recommendations and now unfortunately it is a further waiting game. I would say not to go privately only because you may need to go over the same things which could be frustrating for you and your son, but then again, if I was in your position, Id pay millions for an answer. Trust your instincts lovely!Thanks for sharing this with us at #TriumphantTales, look forward to seeing you back next week!

Hi Rachel, I bet you felt slightly better for writing this post even if it doesn't help your son in any way. Getting a diagnosis for anything is frustrating and it can feel lie we are being sent from pillar to post, but hand in there and I'm sure ou will get answers. Just stay away from Mr. Google!

Oh wow - how utterly stressful. And you haven't failed your son, you've done everything you could think of to try and sort it out. But I know how us mummies just beat ourselves up about anything to do with our kids. Hope you now have some clear answers! #itsok

Thank you. Unfortunately, we STILL have not had our referral through from the Paediatricians at the hospital!! (It's mid Oct 2018 now!) Luckily though (and i'm crossing my fingers whilst I type this...) the red marks have been disappearing and most of them have stayed away. I just hope that it's going to clear up and go away forever. It worries me that I may never know what it was that caused it, or whether it has caused any long term damage, or if it will come back? Let's hope not, hey? :)

Oh that must be so hard. We tend to be so hard on ourselves. You are doing what you can and kept pushing the issue you are not failing him. Hopefully the next appointment can lead to some answers and resolve the issue at hand. #itsok

Thank you. Unfortunately, we STILL have not had our referral through from the Paediatricians at the hospital!! (Mid Oct 2018) Luckily though (and i'm crossing my fingers whilst I type this...) the red marks have been disappearing and most of them have stayed away. I just hope that it's going to clear up and go away for ever. It worries me that I may never know what it was that caused it, or whether it has caused any long term damage, or if it will come back? Let's hope not, hey? :)

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